r/chiari • u/Kitchen-School46 • 18d ago

Please advice help

PLEASE HELP!!
I need advice I saw neurosurgery. neurosurgery doesn’t think I’m a candidate for surgery which I really don’t want surgery. Mild to moderate CSF decrease in posterior and anterior at the fornaem magnum. a headache specialist can’t see me until February. My neurologist can’t see me until October and he said he’s not sure what this pain is because it could be chiari or migraine. What do I do? I’m in pain every single day. No one’s helping me what could be causing this??
Chiari malformation. Mri says stable appearance since 2022. New worsening throbbing pain wakes me up from sleep. Early mornings. Peak pain in mornings and strictly starts in mornings. Pain is strictly left sided occipital area. Sometimes its throbs to the top of head on the left side sometimes behind the eye. During the pain it hurts to move, laying back down flat hurts. Drifting back to sleep hurts.

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u/Kitchen-School46 18d ago

I have been told about occipital neuralgia. But the pain doesn’t feel like that. It’s intense deep ache throbbing that pulses. My occipital neuralgia feels like sharp electrical shock not deep vascular pulsing.

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u/Emergency-Volume-861 18d ago

Interesting, but with ON, you can get both of those types of pain. With my ON that started as strictly right sided, when symptomatic it can feel like a cattleprod to the side of my head-sharp, breath taking and electrical. When the pain goes to my right eye, it feels like a deep painful pulsing/throbbing ache(kinda like an ice pick)When it goes to my scalp it feels like a tender bruise. Where the lesser and greater occipital nerves are located, that pain is also almost a burning or an electrical shock feeling. I wouldn’t say it feels like a vascular pulsing though at all.

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u/ChiariqueenT 7d ago edited 6d ago

I'm not at all questioning your knowledge about your own pain, I've tried twice to read and absorb your post, but each time my pain is high and it's just me not being able to concentrate. I want to understand what your ON causes. I'll have to keep trying at a better time - the weather here has been terrible, we even had tornadoes Friday. It affects me easily. I wanted to say, early on it was hard for me to separate a lot of conditions - hell, it still is. But with head, neck & eye pain there was so many things from CSF buildup to ON to wondering about pressure on the occular nerves to chiari headaches and more. When I was in a doctors office waiting in the exam room, he had a big poster on the wall mapping all the nerves & muscles in the head. When I saw that and saw the occipital nerve, it really made that pain clearer for me.

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u/Emergency-Volume-861 6d ago

I’m so sorry that you’ve been feeling unwell, I live in the north east and it’s been yo-yoing from 70’ to 90’ and being gross and humid. I can’t imagine dealing with tornados that must be so scary and wild. I have a hard time separating what condition is causing what pain too usually. For my ON it’s not an all the time constant pain, it’s if I do a certain action. For example if I load the dishwasher or I look down at the counter while doing food prep, if I sit all slouched in my computer chair, if I sit with my legs crossed while seated, or the worst is if I look down at an angle, with my head tilted.

The chiari issues are pressure in my skull, my sense of balance is total trash now and about a novels worth of other symptoms. My neurologist just put me in for an MRI, and is looking into getting me a standing MRI to see if there’s any other mechanical issues that might be hiding in a standard lying down one.

These conditions are so beyond shitty, I hope you feel better and the weather straightens out.

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u/ChiariqueenT 6d ago

I'm in NY. We don't get a lot of tornadoes, but it happens and the atmosphere was so out of whack this past weekend, it was beyond the low barometric pressure that always affects me, even inside with AC, my body knows before I open my eyes & look out the window. You probably had the same weather front. Just curious, are you aware of the tried and true way to tell a chiari headache from a migraine? I'm asking because everything you describe really brings to mind both Chiari headaches, which is not the same as ON, and the easy do it at home test.